Hello methtextrate

[Alliekat65]

So another visit to eye clinic and AGAIN they are going to drop my pred...BUT due to oral thrush. and the other flipping side effects the opto lady said she was going to talk to my rheumatology lady about methtextrate any views pleasr

[PMRpro Ambassador]

I'm blowed if I can see why she thinks putting you on MTX will reduce the likelihood of getting thrush! The most common oral adverse effect with MTX is mouth ulcers, the second most common is candidiasis - commonly known as thrush. It is a risk with ANY immunosuppressant medication - like pred, methotrexate and many others.

Someone asked earlier what they teach them at med school ...

[DorsetLady PMRGCAuk volunteer]

Not sure but are you still on 40mg as per couple of posts ago? — then you said it wasn’t helping - so is that why ophthalmology people are suggest reducing it -if so to what dose?

Oral thrush is one of those things which an occur at any dose [and easily treated by abx], so I hope they aren’t using that as an excuse to drop dose…

Think it’s a bit of a knee jerk reaction to add in MTX [plus that takes time to be effective].

Strikes me you need a proper investigation of what’s going on - and sorry to ask, but are you actually under a rheumatologist?

Your whole situation seems to be a bit of a buggers muddle [excuse language] - and needs someone sensible to sort it out!

[Alliekat65 in reply to DorsetLady]

yes on 40mg and she today suggested going down to 30mg ! i was surprised . think she thought of mtx as I have side effects like insomnia

jitters especially in evening. and heartburn.

yes have rheumatology lady seen her only once but she gave me leaflets on it then !

with the ultrasound she saw nothing new. but blood pressure has been high and so have BM. ..IM AT A LOSS

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

Well MTX has its own side effects -and doesn’t work for all.. but I suppose you can only try it and see if it helps you.

[PMRpro Ambassador in reply to Alliekat65]

Yes, well everybody gets such side effects so it isn't surprising. They do usually improve as your body gets used to it and the dose falls. But it does help some - but not in a few weeks as some doctors seem to think - and has its own side effects. And one of those is to sometimes amplify pred side effects!

[Alliekat65 in reply to PMRpro]

I never knew wat a minefield this is!I almost feel like it's a ..well let's try this .. then that.she also spoke about tocilizumab . but not till we try..if we try meth...

[PMRpro Ambassador in reply to Alliekat65]

I'm not sure a lot of rheumies do either - they are used to managing RA where MTX is the first line gold standard worldwide. Somehow they seem to think that if it works for other rheumatic diseases, it will for PMR/GCA too - but they are a vasculitis basis, different thing. In fact, it does seem to work brilliantly for some PMR patients - are they misdiagnosed inflammatory arthritis patients? But while rheumies are convinced that MTX is a wonderful drug, has few side effects and is far safer than pred, the patient experience is often very different. When a study was done comparing opinions expressed by doctors and patients, a third of patients reported they had had a good result with MTX, a third said they'd had to discontinue it because of adverse effects and the other third because it didn't work for them! Which is hardly a ringing endorsement is it?

[Alliekat65 in reply to PMRpro]

blimey.....if they don't know apart from you guys..how would a newbie like me get straight answer???AGAIN A MASSIVE THANK YOU

[PMRpro Ambassador in reply to Alliekat65]

Well they don't like patients to get the idea it isn't the wonder-drug they are trying to convince you to take!! As DL says, the cheaper options also must be tried even in inflammatory arthritis, not least though because there is no going back, even the super drug options, the biologics, are limited in effect and may stop working eventually. The exception seems to be that when the year of TCZ is finished, most rheumies put patients on MTX or LEF with the pred in the hope they won't relapse. Doesn't appear to work very well though.

I also don't know what the criteria are to get TCZ in the first place - at one time there had to be a documented diagnosis by biopsy or ultrasound and by no means all patients being treated as if they have GCA have that.

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

Because TCZ is still very expensive and ( at present) is only used for specific patients -most have to try other cheaper options like MTX first before it’s authorised.

[Alliekat65 in reply to DorsetLady]

so I'm a cheap date then lol

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

Couldn’t possibly comment on that !

When initially authorised -strict criteria applied -still apply now. Charity and others are pressing for it to be be available more widely

“National Institute for Health and Care Excellence (NICE) approved its use in relapsing and refractory GCA from July 2018 for a maximum of 1 year.”

edit -

This from 2018 advice -

1 Recommendations

1.1 Tocilizumab, when used with a tapering course of glucocorticoids (and when used alone after glucocorticoids), is recommended as an option for treating giant cell arteritis in adults, only if:

they have relapsing or refractory disease

they have not already had tocilizumab

tocilizumab is stopped after 1 year of uninterrupted treatment at most and the company provides tocilizumab according to the commercial arrangement.

.. and yes as PMRpro says documented proof from procedure diagnosing GCA..

[Alliekat65 in reply to DorsetLady]

yes saw this yesterday usa are ahead of us ..I'll move to florida lol

[JGBH in reply to DorsetLady]

Sorry not sure I know what abx as a treatment for oral thrush?

[DorsetLady PMRGCAuk volunteer in reply to JGBH]

Anti fungals are usually first choice, sorry should have made that clearer. But antibiotics may be used it it becomes more severe.

[JGBH in reply to DorsetLady]

Thank you. I am taking Nystan oral suspension at the moment. Had a course of antibiotics earlier on . Being on biologics for many years and on omeprazole certainly doesn’t help. Never had this before and wondering whether I will always have this from now on as I can’t stop any of the drugs I am taking.

[DorsetLady PMRGCAuk volunteer in reply to JGBH]

I had oral thrush early days on high GCA doses of Pred.. and it took a couple of course of Nystatin from GP to sort it… never returned.

Hope yours is the same.

[JGBH in reply to DorsetLady]

Glad you got rid of this! I didn’t have any problems on a higher dose… but taking many other drugs doesn’t help.

[DorsetLady PMRGCAuk volunteer in reply to JGBH]

No it doesn’t 🤦🏻‍♀️

[PMRpro Ambassador in reply to JGBH]

I used to have almost constant thrush but after a really good long course of Nystatin tablets it never came back. You do have to clear it out and if it is oral thrush - change your toothbrush every couple of days until it is clear - get a load of really cheap/disposable ones - or use Milton solution to sterilise one nightly.

[JGBH in reply to PMRpro]

Thank you. Did you have a hoarse voice during the oral thrush episode? I lost my voice very quickly and it became so hoarse it was difficult to speak. The GP said it’s what happened with old age… ! (Losing one’s voice and being hoarse… I am 78 just). No doubt more fobbing off, me thinks. Strangely enough since I started the treatment my voice is alright… so much for old age then! I have Nystan suspension, 1 ml x 4 times/day for 7 days. I am concerned it will recur … I also have a middle ear infection (this is not the first time either, happened when I was first diagnosed with oral thrush…) That it should had recurred at the same time as oral thrush is interesting. Coincidence or is it linked?

[PMRpro Ambassador in reply to JGBH]

Cheeky sod - when it is that quick it isn't likely to be due to "old age" but my voice did change with PMR. FIrst I lost breath control which made choral singing a bit unreliable and then later I could no longer guarantee what note would come out! That was long after the thrush but mine was predominantly GI tract and didn't seem to affect my mouth. But I'd say the thrush is to blame rather than age - there is only so much coincidence I can accept!

[JGBH in reply to PMRpro]

Indeed… so much gaslighting in the medical profession… any ridiculous suggestion when they are too arrogant to say they don’t know and instead looking into possible causes and tests to exclude or diagnose. In my case it is more oesophageal thrush than oral… I don’t have any oral abscess…

My immune system is very low plus treatment with strong immunosuppressive biologics treatment over many years must take its toll on an aging body… or as I am now classed as ‘frail’… true but gosh, don’t I hate this qualificative!

[PMRpro Ambassador in reply to JGBH]

I headed my GP off at the pass before he suggested "all in your head" - he had failed over a period of over 4 years to recognise PMR - and he knew me well enough by then NOT to try it. Before I moved here I went to say goodbye and asked what he now knew about PMR and GCA - at least he admitted "not a lot" but would try pred and find someone who did know. Is that half a success?

[JGBH in reply to PMRpro]

Is it half a success? Perhaps not quite. He probably felt cornered and had to admit his ignorance. It seems he had no intention of improving his knowledge and understanding of the illness though.

My GP knows me well because I have fought several battles with her… sending letters (many) including copies of serious research papers… which had to be included in my notes. Nearly every blood tests or MRIs or other check ups are requested by me… she obliges although appears to forget certain tests at times. So I go back but it’s most tiring and I do not have that much energy. I really should not have to suggest to her what she should do. Why is she well paid for? GPs in the UK are overpaid since they run their practices as a business. Appalling. Most only work part-time and/or have private appointments. Yes, there are a few good GPs… not enough.

[PMRpro Ambassador in reply to JGBH]

I'm appalled at some of them!!! They need to be sat down to watch "GPs behind closed doors" and told to bring their standard up what is shown there!!!!

[JGBH in reply to PMRpro]

Indeed! They don’t care since too manu people in the UK do not take them to task… do not fight (they should not but) with them … They think they’re superior to other people and have no inclinations to change their lazy ways because they’ve got away with it for so long! It needs to change… All Patients need to become more proactive, not be afraid to politely speak their minds up, be assertive, be firm in their requests (although it still doesn’t work 100%) then eventually there might be a shift, maybe.

[Pixix]

I’ve had oral thrush about 5 times in 8 years now. 3 times before steroids, but after antibiotics! Nystan worked very well, but keep doing it, don’t forget! S x

[JGBH in reply to Pixix]

It’s a week’s duration… so hope it will really help.

[Alliekat65 in reply to JGBH]

thank you feels like its such a fight I need a nap just thinking about it all

[Pixix in reply to JGBH]

Should do it OK!

[JGBH in reply to Pixix]

Fingers crossed 🤞